Just when I think life is…oh, I don’t know…somewhat OK—I get sucker punched.

Last week, Jack had a GI appointment. Sebi went with us to make sure I didn’t end up in jail. While talking (yes, JUST talking) and scheduling a procedure, Mr. Jack began the poop push. The kid is on several adult doses of laxatives a day, and he still produces rabbit pellets every 3 days. After pushing, and pushing, and making us all feel bad, he finally produced. Sebi left and I packed up the chair and the kids and got in the car.

We pulled out of the parking space, and Jack says: “MAH BUTT!” So I pulled back in. He produced again. Only it wasn’t pretty. I cleaned him, and we headed on. By the time we drove 3 blocks, I had to stop again. We got to TJMaxx, and I had to stop. I left TJMaxx twice. We also made deposits at Checkers, Burger King, an auto parts store, a McDonald’s, a gas station, and Kroger before we made it home. I had to stop and buy diapers and wipes.

I was crying–begging Sebi to call the pedi to get him in. Janson was crying from the toxic fumes.

We made it home in time for another round of “drama!”

I knew before we even hit the doctor’s office that Jack had strep. This is exactly the way he presents (some kids barf when they have strep, mine blows out his colon. It’s a gift). The doctor patted me on the back….and told me that I need to keep him homebound for school (which was kind of nice, because I was afraid she was going to be all about putting him in a real classroom!).

So I spent the last week in a fog of antibiotics, fever, and whining. And of course, Sebi was out-of-town. I was so tired and stressed at one point…I took a shower. A real hot, long shower. The one where you cry and talk to God and let it all out. I felt almost better until I went to wash my arms and realized I still had my bra on.

This week…J has it. Only she’s not as whiny and her colon is fine.  Jack went to Dr. Lung today. He’s a hot mess. His lungs aren’t really getting better (not that they were really supposed to being that he’s palliative). She was hoping that we could make it through a season without steroids. That’s not happening. His lung function has decreased a bit. Not anything major, but enough to warrant upping some meds and changing others.

It’s such irony, you know. I sit there and talk about such heavy stuff with her, and Jack is smiling and laughing and yelling, “I LUFF OOO!” at her. Wouldn’t it be awesome if we could be more like him, and less like…a giant ball of worry? She suggested we enter hibernation until spring. Sebi and I are going to work on a plan where we don’t take Jack out at all, but I can still get errands and things done. We’re considering a clone, but I hear they’re expensive…

There is (hopefully) going to be some news out of Fort Hopeful within the next few weeks that will change the game all together. That’s what I am looking forward to. Hope is the only thing getting me through right now.

(I really do wish I could be open and honest with y’all. But I can’t for various reasons…don’t need to feed the animals! You’ll forgive me later, I promise!)

Non liked kids. Non liked chocolate. Halloween was the best of both worlds!

When my brother was little (like toddlerish), he was pretty obsessed with Return of the Jedi. My mother decided to make him in to an Ewok for Halloween. I remember that there was a lot of furry fabric, a screaming brother, and Non came to help. The year I broke my arm, she and my mom wrapped me in toilet paper to be a mummy.

However, this recent snow fall in the area of my homeland had me remembering…

There were years when we first had to put on 5 layers of clothing and a snow suit. Then, you fit all those clothes under a plastic Scooby Doo costume (come on, don’t you remember when costumes didn’t cost a billion dollars and they were plastic with masks?). Non was the only person in the universe who had enough patience to gently slide us in to the costume while simultaneously stretching the plastic so it wouldn’t rip.

And then…she’d go. She didn’t like the kids that dressed up ugly, and she didn’t like kids being bad or mischievous.

42 weeks without her…and it still hurts.

There was never a truer love in the whole world—since the history of time—than the love between my grandparents (actually, that goes for both sides of the family. My other set of grandparents are still madly in love and have been since they were teenagers…).

When my grandfather died, a piece of Non died. It was very sudden, and Non was very young.

But she swore to be true to him forever.

And she was…mostly.

There was Boyfriend #1: He was a nice guy. He bought presents. He took her to dinner. But the minute he suggested anything more, she was done with him.

He died within a year.

Boyfriend #2: He was a nice guy. He came to stuff us kids did. She fixed him meals. She met his family. He suggested a deeper relationship, she dumped him.

He died.

So she started to call herself the Black Widow….which totally worked for her. Men would suggest they date, and she’d tell him how she’d killed her previous suitors…

Even when she was here, she would say, “Don’t leave Sebi home alone with me…he might turn up dead!” Then she’d laugh and laugh and laugh.

I imagine that when she arrived at Heaven’s Gate, and found my Grandpa, there was a great reunion…and I bet he teased her terribly about being the Black Widow!

I’m telling you, the woman had SuperPowers. She could make a dollar stretch to Egypt and back and she’d still have change. She could fashion a prom dress out of a pair of old curtains that would make all the “in” girls jealous. But, her most superior skill was in the kitchen. She would bake cakes and treats that rivaled Hershey.

I did not get that gene.

So, I read that October 8 is National Pierogi Day. I decided, of course, to produce home-made (with love) pierogies for my family. I made the mashed potato and sauerkraut fillings to precision. I made the dough using the precise methods that Non would have told me to do. The problem was in…the recipe.

I have an entire book of recipes that Non would write down for me and send in letters once or twice a week. I have her Chicken Divan and her Pot Pie, her sand tarts and her pecan tassies…all because we talked food for hours on the phone. Well, once she recapped her frustrations with All My Children, we’d move on to what I was cooking and if I had actually gone to the store.

Some of these magical recipes are spot on with their measurements, others…were Nonified.

I have one that reads:

One handful of flour. Half a palm of baking powder. A Couple shakes of salt and pepper.

Do you see where this is going?

My poor pierogies…basically, I made playdoh. Really, really bad playdoh.

Oh Non…I wish your SuperPowers would help me!

Or, I wish I was independently wealthy and could order in all the time!

5 years ago, we sat nervously in a lawyer’s office.

(you were worth the wait)

5 years ago, it was raining, cold, and dreary.

(you were our sunshine)

5 years ago, I hugged your birth mother and thanked her for you.

(I still thank her)

5  years ago you barely ate, and rarely slept.

(some things haven’t changed!)

5 years ago, we started a journey that would change us all forever.

(you’ve made us better people)

5 years ago, we didn’t know how hard you would have to fight for this life.

(just keep fighting, kiddo)

please, keep fighting.

Happy Jack-i-Versary!

(to you, and you, and even YOU!)

Today was Jack’s IEP.

We’re professionals at this, so we were prepared.

Basically, they (finally) came to terms with the fact that they are putting unrealistic goals on him, so we’re backing off. They also have decided that his medical issues are bigger issues than his learning disabilities, so we’re going to (finally) take that in to consideration.

They will be sending an occupational therapist to the house to evaluate him for assistive technology (finally) to see if he’s more appropriate for a keyed type computer, or something like an iPad. Either way, it’s a good thing. He still qualifies (easily) for speech. Her goals have changed too. Mostly because he’s not progressing as well as they had hoped, but that’s OK.

They would like him to enter the Medically Fragile Classroom at the start of next year. I’m not sure that’s at all appropriate and I said as much. They actually agree with me, but because they’re “with the District” they have to tell me what the District wants me to hear.

He did fairly well on his testing. Of course, motor skills are quite lacking, and fine motor is worse, but we’re plugging on. We’re going to work on having a picture schedule hanging somewhere for him, so that if there is a change in plans, we can show him by picture, rather than having him freak out over change. I’m not entirely sure that will work, but it’s worth a shot…

That’s it! I’m thrilled that they are (finally) joining the year 2011 and allowing us to discuss assistive technology. It makes no sense for it to be there for use, and them not to allow us to utilize it. It’s going to be a definite improvement over the current frustrations of having a kid with an essential tremor try to write his name and cut with scissors!

Jack has decided that he wants to dress up everyday.

Not dress up like put on a tie and some argyle socks… he wants to be a fireman, or a banana, or…

a clown.

Yes, Jack begged for days for a clown costume. I thought, being that we’re nearing Halloween, it would be easy to find such an item. We went to the Toy Store of Doom. The Toy Store of Doom had nothing but blood and guts or baby buntings. We went to the Giant Party Store (who claims to have a bazillion costumes!) and they had pictures of clown costumes, but couldn’t  bother to hang up the phone find one for me.

We returned home with quite the unhappy Jack.

“Momma, I wanna be funn-ay!”

In my broken state, I turned to Twitter. My friend, Tiffany, told me about CostumeDiscounters.com

I emailed back and forth with them, and they seemed to be quite the company. We got Jack set up with a clown costume! He was tickled pink (to say the least!

I (to be completely honest) wasn’t expecting much from a kids clown costume. But, this thing is amazing! The quality is very good–definitely not the flimsy costume that you’d purchase at the Toy Store of Doom! Not only are they super cute, but they are affordable!

SO affordable, that I went and bought more costumes. I bought him the Darth Vader costume and a banana (after all, he wanted to be a banana, who am I to argue?!). I received instant confirmation from CostumeDiscounters.com–where they guarantee that if you find a cheaper price on a costume anywhere on the Internet, they will match the price PLUS give you 20% off! (Hello? AWESOME!)

But, wait…there’s more!

Once I received the package in the mail, I also received an email from CostumeDiscounters.com telling me that my items were delivered!

Go now and purchase your Halloween costumes…don’t regret it. You have time. I’m telling you how to save money. RUN!

(The adorable face below was costumed by CostumeDiscounters.com, although I bought the other two costumes myself. And you should go buy some now!)

Today, I’m 35. If you know me, it’s no secret to you that my birthday is one of the Most Anticipated Days of the Year! I usually have a count down started by March. One of these years, I’m totally going to make Sebi good on his promise of a parade….with a dancing bear. Or something.

This means, I no longer be lumped in to the 18-34 demographic, which essentially makes me old, right?

Sigh.

5 years ago, today, we received a call inquiring if we would be interested in adopting a baby boy who was waiting for us up the road a piece.

My, how time flies. How hearts change. How love grows. How loss hurts.

When I was a little girl, and even when I was in college, Non would take us out for our birthdays. It was our special day. One on one with the Nonnu. We’d hop in her car (license plate IAM NON) and most often head to the local mall. Seriously, in Mayberry, there weren’t many other options.

Many times, we’d wander from store to store. She’d grab my hand from time to time, and I never felt ashamed or embarrassed. Her hands were so soft and tiny. I have never felt skin as soft as hers, and I never will again. We’d just hold hands and talk and wander through the mall. She let ume pick out a gift (more often than not, it was a clothing item) and then she would take me for lunch. Anywhere I wanted to go—it was my day. I remember one year, my cousin chose to go to Hardee’s, much to Non’s chagrin! My brother often chose weird places too, like McDonald’s.

My favorite spot…the A-Frame. It’s an A-frame house that’s been converted to a restaurant. They have other menu items, but the only thing ever ordered was a cheesesteak sandwich. We would share one, along with a bag of chips, and talk.

If I was especially nice, she would drive home the long way, which allowed us to drive up the hills to where you could see the leaves beginning to change color and the apples ripening in the orchards. Then we would arrive home to spend time with all the family eating cake and sharing laughs.

I adored our time together. Every single moment of it.

So, I’m going to be here…waiting for the parade to start…remembering my Non, my cheesesteak, and enjoy my family. Because, that’s what she would want me to do.

From the minute Non met Sebi, she was enamored. Actually, I think that feeling was pretty mutual.

When she was at our house, she coddled him as if she was his wife. If he mentioned that he thought the brownies on a commercial looked good, she would make brownies appear. If he asked questions about her favorite meals, she’d whip it up and have it laid out as he walked through the door from work. He adored every moment of it. She adored making him happy.

They were madly in love.

However, there was one minor thing that bothered Non. She dwelled on it, and questioned Sebi every time she could. She desperately wanted him to get his citizenship. She was convinced that for some reason, Sebi was going to get deported and leave me alone with the kids. I have yet to figure out why she thought he’d get deported, but…

Anyway.

Last November, Sebi sent in his paperwork to become a citizen. Non was over the moon excited for him (or maybe it was for her own self…). In March, he went to the INS office to have his interview, and we then waited for our date to get him sworn in. Last Wednesday was our appointed time and date.

The city we had to go to is a good 3 hour drive, and we had to be there by 9:30. You can do the math on that one. We left the house in the dark, and it was pouring rain. We made sure Non went with us. Jack had the blanket Non made him, J wore the necklace from Non, and I had on her onyx ring.

When we arrived, it turned out that there were 4 courthouses in one area. We were looking for the federal one, and we couldn’t find it to save our lives. We found a gate with a large, bald man (who had a gun) and asked him where to park. He yelled at us and told us to drive around the block and look for another man. The Larger, Balder Man with a Big Gun was waiting for us. Before I could have the wheelchair set up, he told us that we would be leaving our phones in the car. As in, there was no choice. And there was no reasoning with him either. He had a gun.

We entered, got patted down and went through metal detectors. Eventually they let us in to a courtroom.

Alissa arrived and the party started.

The Head Judge entered, with his sidekick, Other Judge.

“All Rise. (blah blah blah) God Bless Ameri-cuh, and God Bless Jaw-Juh.”

Head Judge started to talk–with the most country accent you have ever heard! He welcomed all the esteemed guests, and the civics class from the local high school. He then introduced the mayor who talked about his experience of immigration–even though he was Canadian and got American citizenship at 18 since his parents were citizens already.

Head Judge then introduced all the civic leaders from the community. There were the Daughter’s of the American Revolution (actually, there were two groups represented. The local chapter and the neighboring chapter–rivals!!!) who announced that they provided punch for the reception afterwards. The 17th Century Dames announced that they had never been to a naturalization service, but they brought flowers for all the citizens. The Masons provided the cake for “these important people, on such an important day.” I was struggling to keep the snort from coming out of my mouth, but there were tears in my eyes, and Sebi couldn’t look at me.

However, that snort had to escape at some time. Head Judge then introduced the Junior League president. He said, “This is Mrs. Peter “Bubba” Smith, the third–who is not only the Junior League Presidient, but my first cousin. And also, my prettiest cousin.”

Sebi had his head in his hands, and I was laughing in to the top of Jack’s head.

Meanwhile, this little old lady kept looking at me. I smiled. She smiled.

She says to her husband, “She has extra programs. Do you think she’d let us borrow one?”

He says: “Maybe she’s here with a new citizen.”

She says: “Maybe she doesn’t speak English!”

He says: “Maybe….”

I hand them a program in time for the judge to introduce the Other Daughter’s of the American Revolution president. She stood up and announced that her uncle had come to the United States in 1840 from Germany to produce cigars in his own home. So, therefore, you can do anything you want in America. Then, you know, to outdo the other DAR chapter, she said her chapter had made each citizen their own Apple Pie. “You know, because Apple Pie is American. And you’re going to be American. Get it?” (I died!!!)

Finally, Head Judge pauses. He takes a deep breath. He says how the past week has been very difficult for the community because they lost a beloved member. The head of the Board of Elections had passed suddenly, and it was a beautiful ceremony, and she would be greatly missed. Not only was she the head of the Board of Elections, but she was his Aunt’s cousin (at this point, every single little old lady up there, whips out the hankie shoved up their sleeve, and pats their eyes).

Sebi looks at me. I look at him. We both have tears from laughing.

I look in the back of the room and notice that friends of ours have arrived…which was weird, because the service was almost over.

All the new citizens were sworn in and pledged their allegiance to the United States. It really was moving.

The pastor gave the benediction in which he uttered the words, “Just like all those young ‘uns say, ‘Wahoo!’”

It was over.

The old lady brings me back my program. She yells, “Honey. Where. Are. You. From?”

I say, “Sa-van-nah.”

Her: “Well, where is your citizen from?”

Me: “Chile.

Her: “Isn’t that by Mexico?”

We made our way out and everyone hugged and took pictures. We started talking with our friends who were late. They had been calling us all morning (but our phones were locked in the car, since no one was allowed phones in the federal building), because they got lost too.

Sebi has an accent. No, he doesn’t. He has trouble enunciating his words.

The address of the courthouse was on Ford Street. Heidi and Chris thought he said Fourth Street. So they went to Fourth Street. Fourth Street is a lovely area, which also houses the prison. They found it funny that there might be a citizenship service there, but they tried anyway.

(can’t stop laughing!)

We had a great day. It was just wonderful.

As we left, Sebi looked at me and said, “Non would be so happy!”

I know she is!

I love this guy...

Today was our quarterly “meeting” with Dr. GI. Since the last visit, Jack’s been on the high calorie formula and tolerating it mostly well. However, he was also placed on the palliative care since the last visit, so I had to tell him all that.

(which, to tell you the truth, does not get easier over time…)

He’s gained a whopping 4 ounces.

We talked food, feeding, and football (we didn’t talk football,  but I needed another f word to counteract the one I’m about to tell you I dropped). He wants to try feeding therapy again (even though we got kicked out, AND the kid is still aspirating. You know, because he wants to feel like he’s doing something.) He talked to Jack about eating and Jack told him he likes circle crackers (Ritz) and plain toast. Which is sort of the extent of his diet at this point.

I mentioned that I am still  having trouble with the NoNo (g-tube). He tells us it hurts multiple times daily, and changing it requires all hands on deck, and a shot of tequilla (for me). I told him in January that there was something wrong. I called in April to tell him there’s something wrong. In July, I forgot to talk about it because I was too busy worrying about him losing weight.

He listens, and he fills the balloon up with water, and empties it. As if I didn’t do it right or something.

***This is the part of the story where you will read and see things that are not normal for me. I apologize in advance to Non, my Mom and to Jesus***

He tells me to get Jack up on the table.

Jack is no dummy. He has this figured out and yells, “NOT THE NONO!”

There are now 3 adults holding Jack down to take the NoNo out. Just take it out. This is not normal for my kid. He has been through so much, he usually just takes it like a champ, and we move on. It’s not like he’s not had the thing changed a few dozen times over his life.

He gets it out, and says he’s going to change it to a Mini instead of the Mic-Key (funny, right?).

So he starts…and he can’t get it in. He’s mashing on Jack, he’s trying really hard….

“hmmm, I see where this could be a problem, Heather.”

“You think?”

“Hang tight, Buddy…”

“WAHHHHHHHHHHHHHHHHHHHHHHHH!!!!”

“Momma will get you a pony, the police car at Toys ‘R Us, and the Real Death Star if you just hang on…”

“WAHHHHHHHHHHHHHHHHHHHHH! make him stop!”

(mom’s heart breaks…)

At this point, he puts some giant tool down Jack’s stoma to keep it open.

And I lost my ever-loving mind.

Jack is screaming bloody murder. My poor, sweet girl child is sitting in a chair in the corner looking like she may throw up or cry, or both.

“Get Your F-ing Hands OFF OF MY KID UNTIL YOU CAN DRUG HIM OR SOMETHING!”

“Heather, calm down.”

Well, when he said that, I sort of saw like a prism of color, and then someone else took over my body. I remember saying things like, “Fix this mess you made, RIGHT NOW!” and something to the effect of “I KNOW HOW TO GET TO THE  (bleepity bleeping) O.R FROM HERE!”

I guess my break with sanity caused him to pause, because he just up and left the room. I scooped up Jack and he was just broken. He was doing that sob where they literally shake and can’t catch their breaths. I was shaking too, but for other reasons.

In the end, we managed to get the original tube back in.

The plan is to get the Mini company to send their magical introducer (which is the fancy word for a paper clip that you shove inside the feeding tube to make it more rigid, which makes it easier to put in) so the doctor can replace his tube.

I stupidly asked what we would do if he can’t get it changed.

Surgery. They’ll put his tube in a different spot.

(which is when I had another break with reality, because OH MY GOSH why did we just go through all that instead of saying, “Gee, seems like this is a big issue, let’s schedule him for a little change in that site?”)

(Sorry Mom)